Hi everyone. I have just upped my mycophenolate dose to 750mg in the morning and 750mg at night. I have been suffering ever since with trouble sleeping. It's driving me crazy! Has anyone else experienced this atall? Will I get used to them after a while and be able to sleep? Other than that I have tolerated the drug really well compared to any others. Due to up the dose again next week to 1000mg am and 1000mg pm.

Jo

30 Replies

Jo....as you know I am following your posts with interest because I am wanting to swap from methotrexate to mycophenolate. I am not sleeping on the methotrexate until early hours (last night 4 am) so was hoping a change of drug would stop this. I too will be interested on what others say. Thank god for this forum. Good luck too with your increase in meds xx

Hi mstr. Not long now until your appointment is it? I really hope they can change you over. I can truly tell you that I feel so much better on it than the methotrexate. I have also got a lot of stress at the moment so it could be why also, moving house amongst other things! Just read in the side effects that it could effect your sleep. Know it takes time to adjust on all these meds so really hope it settles down. Feel like an absolute zombie!

Hi Jo, no not long now I'm just so glad that you and Purpletop are ahead of me with trying the meds so I know I can ask away. I always feel like I have been steamrollered over my body on a Friday with the methotrexate at 20mg week. Good luck with your house move by the way tooxx

Yes, it can cause insomnia. I find it difficult to fall asleep before 11 pm, so i tend to stay up till 12am, go to bed and then fall asleep within an hour after that. I also have vivid dreams with it. But at least it doesn't wake me up at 4 am as steroids used to.

You never know with side effects, whether they will go away or not. Mine hasn't gone away after 7 months but it isn't that bad, I still get 7-8 hour sleep, I just sleep later than normal (instead of getting up at 6am, I now get up at 8-8.30am). But I'm not in work at the moment, so I can do this. Difficult if you need to get up early.

Hi purpletop. Glad I'm not the only one! Yeah getting weird dreams and thoughts that are a bit weird when I'm trying to sleep. Only happened since I have upped the dose this week. Got to up it again next Tuesday. I hope it doesn't get worse

Hi Purpletop: yes, prednisolone does give me a greater tendency to broken sleep (and I was only on 10mg max), but 20mg Amitriptyline at night smoothed out even those pred-disrupted sleep patterns, by making it much easier for me to get to sleep initially on going to bed, and easier to get back to sleep any time I wake during the night. Anyway: are you on Amitriptyline? (I've asked this in more detail below in my main reply.) So glad we're all discovering myco together....am feeling very lucky you 3 are all ahead of me though... Makes me feel a lot braver.....

Here I am also in the early weeks on myco (mike o'fenolate) and very glad of your good company right now. I'm not meant to up my dose to 1000mg/day for another 2 weeks or so. Am now in my 3rd week on 500mg/day, and sleeping ok.....BUT I m dreaming VIVIDLY (like going to the movies ech night!)

for over a year i've been on Amitriptyline (20mg at night) mainly for gyn issues, and the added benefit is that Amitriptyline has levelled out my sleep patterns (have becime totally resigned & adjusted to a disturbed shallow sleep pattern for the past 40 years due to pain mostly, and untreated SLE). Amitriptyline has given me the best nights I've had in DECADES. So, am wondering if any of you are also on Amitriptyline......cause if you aren't, I guess I'll just have to wait for my myco dose to be increased to 1000mg/day before I see whether, like you, my sleep patterns are disrupted (again) DESPITE my Amitriptyline nightly doses....

HI Barnclown, Thank you for that recommendation. That is something else to ask about. Just one query about that amitriptyline as one of my friends uses it for another condition but felt that she put weight on because of it... In your experience do you think this is the case? ..Hope that isn;t too cheeky a question but I'm doing the slimming world diet and it's hard enough not being able to exercise as much with this condition so I want to keep the weight off to help my joints and muscles.

No prob! Big subject, though....Hmmm, have been asking myself the same question.....can i tell the diff between my lifelong spine condition+lameness + chronic fatigue+ age leading to weight gain, vs my various meds inc low dose amitriptyline leading to weight gain.?

I was (undiagnosed) anorexic as a teen & young woman, but, in my late 20s, began to learned to manage this as a lifelong problem, so have had to work hard at not getting upset about the slight (say 15 lb) amount I've gained since I started SLE meds 2 1/2 yrs ago.....and this has happened even on (90% of the time day by day) an anti inflammation diet since I turned 50 (am now 60),

My feeling is that the answer to this question is a pie chart, and the combination of all my oral meds occupies a significant wedge of this pie ..I do feel that plaquenil + Amitriptyline have contributed towards my weight gain....but haha i'm kinda thrilled to find now that myco has totally put me off alcohol & sugar big time!. On the other hand, Amitriptyline has helped me so much, that I'd rather stay on it and be stricter about diet than give it up...but we'll see what happens as my myco dose increases.

Part of how I manage my anorexic tendencies is to never step on scales (except at clinics...and I tell them they mustn't let me know my weight!)...I can tell my weight changes by how my clothes feel etc...the weight thing is always t the back of my mind...and I may find myself at slimming world too one day....

So, I share your concern and am glad you've given me this chance to think this through "out loud"

Thats really helpful Barnclown as if I have to go on something to help with sleep I will now consider this. I do accept that as we age weight gain often occurs....from always been very slim until 40 I am now a size 16 but would like to reduce this slightly for the help that it will give to joints etc and for health reasons. It is harder on the meds but I will plod on. Ps: I have pm you too.

I tried amytriptiline a while ago and it did help me sleep for sure but felt so groggy the next day it made me depressed, tried it for 6 weeks. Lots of people take it for pain and sleeping and can tolerate it really well but I couldn't

Had a better nights sleep last night so hope it settles down once I get used to them.

This is good news: very glad you got a better night's sleep....am feeling encouraged!

Hmmm...I'm sort of lucky: my version of Amitriptyline morning grogginess stopped after my first 2 weeks..and it was REALLY bad too...I wouldn't have continued the Amitriptyline if that extra grogginess had persisted (chronic fatigue is bad enough with out adding that sort of groggy on top!), but I am only on 20mg Amitriptyline. My older brother also stopped Amitriptyline due to the groggines...

Hi there, i'm taking 2.5 g of Mychophenolate daily and have been on this dose for years now. I really havn't noticed any difference in sleep patterns but have always had problems with sleep. Mainly due to symptoms. I now take amitripyline too. I does help. Though i get used to it and stop for a day.or two now and then. Mychophenolate has been a God send. Still suffer bad itchy allergies though. If anyone has any advice on this i would much appreciate. All tje best to all of you x

What can i suggest, aside from the topical steroids I have on repeat prescription for specific conditions involving itches (dermovate &, betnovate), which I'm pretty sure you know about, but my gp & rheumy let me use both these ointments when I have an allergic reaction to sun/plant toxins/insect bites....i hesitate to imagine i know of anything that helps itchy allergies generally, but have you tried aveeno products? My husband has had crohns since his teens (peritonitis at university + several major ops, decades on oral steroids etc very very poorly much of the time but somehow managed a career) but in his 50s went into remission and now the main autoimmune symptoms he seems stuck with are to do with itchy reactive skin...he thinks aveeno really helps soothe itchy skin....but he thinks the root stimulus is cold & heat & haha the elastic in his underclothes...he is a very active, fit, outdoorsy type). I'm sure you've done all the usual lifestyle management things....this is such a tough problem to manage

Would you tell me how you've settled at 2.5g myco? had you been on a higher dose? Are you also on prednisolone?

Hi Barnclown, thanks for your reply. I do use hydrocortisone on my skin. It seems to help a little. I think a lot of my allergies are from insect bites, midget etc. it took years for me to realise what what causing the reactions. I have tried aveeno and I'm allergic to it, even though it's very mild. My skin doesn't seem to like anything. Antihistimines help a little. I am trying to change my diet to see if that helps any.

I also suffer from IBD and have had peritonitis and several surgeries, one a few months ago and it caused a flare. I went up to 30mg of prednisolone but reducing now. Most of the time I just take 5mg unless I'm having a flare.

I haven't been on a higher dose of Mycophenolate. For years I was taking 1,000mg in the morning and the same at night, then they put me on an extra one in the morning. I have auto immune liver disease also, so it also helps to keep that under control. I have also been diagnosed with Sjogrens and Fibromyalgia as well as a kidney problem. So I have quite a lot going on.

I'm hoping things settle down for September as I'm hoping to study acupuncture but could only do it as a lot of work is from home and I only go in at weekends every other week.

I hope your keeping as well as possible. I haven't been on here for long so hoping to get to know everyone a bit better and hopefully give a little support.

Thanks so much Jacqueline...am glad you're here....great plan re studying acupuncture from home! I'm retired now, but working at home was my lifesaver for years.

I'm possibly somewhat like you: got lots going on (infant onset lupus + a life managing a list as long as my arm of associated diagnosed conditions + managing the after affects of injuries to spine). For me, an antiinflammation diet & supplements does seem to help - I started 10 or so years ago at 50, and saw a big degree of immediate positive response, especially throughout my GI tract.

Hmmm....seems to me, allergic reactive skin is amongst the worst aspects of lupus (and also other autoimmune conditions eg crohns)....am totally feeling for you...for what it's worth, something i forgot to mention: possibly my most problematic autoimmune skin condition (the condition I use dermovate (amongst the vvvvvv most powerful of topical steroids) on every other day...been doing this for years now...argh) likes daily emulsiderm baths. I get emulsiderm on NHS prescrip...but probably you've tried something like this? The OTC product line that my skin seems the most ok with is Weleda...the calendula baby range. But I've just read about an affordable French product range that's now available in the uk...when I find the clipping I'll message you the name!

Yoohoo!! I was diagnosed in June and put on Mycophenolate straight away. I have been on 1500mg am&pm since. I did have trouble sleeping at first but I was also on 60mg doses of pred too, as the steroid dose was lowered my sleep improved. Still on 1500mg am & pm at the moment and most of the time I sleep ok. xx

Thank you for your reply. Have actually found my sleep has settled which is a relief, must have adjusted to it pred definitely interferes with my sleep, only ever been on 20mg max and that was bad enough! Was wired on them.

Hi everyone, my daughter Josie is 12 and has been on 1500mg of MMF daily since last August when she was diagnosed. She initially didn't have any problems but since the beginning of November has had some trouble sleeping which has got worse as time has gone by. She generally goes to sleep somewhere between 1am and 3am and is too shattered to go to school in the morning much to the disgust of her 16 year old sister!

She is also still on 10mg of pred on alternate days. Her other symptoms (she had lupus nephritis) seem to be under control apart from occasional belly ache. It's very frustrating, I have to bite my tongue to stop myself from the classic mum 'Get To Sleep!' because I know it's just not that easy for her. The daily dilemma is will she won't she get up/feel well/go to school was getting me down so it's good to have some reassurance that it may be the meds. Not sure if the docs will give her any form of tablets because of her age, they have mentioned possible Melatonin supplements so will wait and see what they say next week.

Hi Braveheart. Your poor daughter! Awful not being able to sleep, she must be exhausted for school. Not sure if they would be able to give her anything to help her sleep at her age. I do take the Kalms night tablets which are herbal, not sure if she would be allowed them. They do help me.

Hope her sleep settles very soon. My consultant told me it can be the lupus itself that causes the problem sleeping.

Hi Jo, Thanks for your reply, she hasn't been to school much this year and only managed about 70% average attendance since September, which isn't too bad but has been much less since Christmas. I just find myself craving normality, for her to be at school with her friends instead of at home alone. Our new plan is for her to sleep until 10am, I will take an early lunch hour (I work full time but close to home) and get her up and off to school at break time. Fingers crossed!

I find that taking first dose of Mycophenolate in the early morning and the second at about 2pm allows me to sleep. I have been taking it for about 6 weeks now and was having horrible sleepless nights and was beginning to have 'restless body' as well.

Maybe I will edge the second dose at bit later . But if I can sleep I feel I can cope.

I have been so restless I can't sleep for a long time now. I am on 3000 mg mycophenolate. I mentioned it to my rheumatologist but she laughed at me. I have had trouble sleeping before but never this uncontrollable restlessness. I have to get up and move around. Some nights are worse than others it has gotten worse as they upped the doses. You are not alone in this.